We honor Sydney’s memory by continuing our mission to seek treatments and a cure for Infantile Neuroaxonal Dystrophy (INAD) and other forms of PLA2G6-related neurodegeneration (PLAN).You can make a gift to support our mission in Sydney’s honor.
03/23/2017 | 07/20/2021
Throughout her journey, Sydney Jo was known by many as ‘Syd the Kid’. She was the pillar of her family with her undeniable strength, loving snuggles and contagious laugh. She had the opportunity to travel the country and beyond to a multitude of places including Mexico, Minneapolis, D.C., Philly, Phoenix, the Grand Canyon, and Disney World. Syd adored her sister and brother as they would do nearly anything to create an abundance of belly laughs. The water was her oasis and her charismatic smile will forever be remembered.
She had the privilege of being a “Wish Kid” for Make A Wish and honored by “Go Shout Love”, of which both establishment honored her short life and rare disease.
It took almost two years of diligently traveling around the United States to various specialists in search of a diagnoses that seemed to be an ever changing ghost. The heartbreak this disease caused is nothing short of devastating and we hope Sydney’s story can be a cause of change for earlier recognition for earlier treatment of INAD.
She and her parents DNA continue to be utilized in multiple studies at The Children’s Hospital of Philadelphia and the NIH. We did not let Infantile Neuroaxonal Dystrophy define Sydney. Sydney was the definition of love and what it was meant to be.